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        New Message Board Archives >> Jan-Mar 2004 >> The things we try
        
(Message started by: CPM on Mar 10^th, 2004, 11:56pm)

Title: The things we try
Post by CPM on Mar 10^th, 2004, 11:56pm

No, my name is not CPM. It's Pete & I'm 45. I'm an episodic clusterhead since 1996, except I never knew it until DJ created this site. Thanks DJ, I'm sure many others have benefited too. Compared to most of you, my beast is relatively tame, 3-7, and typically only visits me for about 30 days at about 20 visits, every other year, like right now. Family physicians have blamed sinus infections in the past and given meds for that. Of course, by the time you go to see Doc, take the meds, the beast is gone. So, of course the Doc was right. Right?! On my scale the beast is really a 10, except I never felt the need to bang my had or jump around. That's why I guess it must be 7 or less. So, I don't like meds and thought O2 sounded great. Like many docs, O2 was not an option, since my doc anyway, is a man of medicine. I know, I need a new doc. So I stumble upon some O2 in a med can and try it out for the first time a few weeks ago. 8 lpm which is the max on the reg and feeding the tube through a large zip-lock bag and sucking through a hole in the bag for about five minutes killed the beast flat. This stuff works great for me. Trouble is, now I'm out of it and wound up trying the O2 in my welding kit - a big pompous tank. Tasted a little weird, but still did the trick. I figure medium breaths with the regulator adjusted to replenish the zip-lock in synch ought to be between 8-12 lpm. In my research today, I learn that I may be a criminal for not having a doc subscription, so I better stop this right now before someone finds out and locks me up. Can't they do that to the beast instead? Of course, I'm sure all CH's would agree in considering the use of O2 to kill the beast is an emergency treatment and therefore permissible by the US FDA. Therefore, it may not be a crime. So, now I have to figure out where to go to have the empty medical O2 tank refilled so that it can be used for emergencies at my home or office. Any ideas? Incidentally, I tried the vacuum cleaner last night and it actually helped. The house is now clean. No, not that - I stuck the hose up my nose (a few inches away) and got a real neat sensation. Almost as if it sucked my brains out. That may explain this post. Best regards to all.

Pete

Title: Re: The things we try
Post by Kevin_M on Mar 11^th, 2004, 12:14am

Pete,

There are other docs in your area. I'm sure a better diagnosis can be attained. Don't quit having faith in the medical profession, but it takes some work to find and work with the right one for you.

Sorry not more to say.

Kevin M

Title: Re: The things we try
Post by cootie on Mar 11^th, 2004, 12:19am

Yeah I see people in dark strobe light lit smokey rooms all the time partyin on O2.......geeze.......is it restricted cuz people can blow themselves up or what's the deal with docs not wanting to prescribe it for pateints you genuinely NEED it? Good luck to ya Pete......find a good doc and find your mix that mite work for ya.....Brad goes to our internalist and he does him pretty dam good with meds and info believe it or not and has a real interest in CH. We got lucky Pam

Course insurence.....that's anouther story !!!

Title: Re: The things we try
Post by Alan on Mar 11^th, 2004, 12:49am

Pete,
If you have insurance, then get your doctor to give you a perscription for medical O2. It's the cheapest and easiest way to go. I used to pay $1 USD for refills on a "E" tank.

Else if you are like me and a bunch of others on this board and dont have insurance, go to your local welding supply house and buy an O2 tank. Then get yourself a medical O2 regulator (say off EBay). Try and get one that is rated 0-15 lpm and already has the correct coupling to fit a welding O2 tan. There are others on this board that can get you hooked up with a 'bubbler' (it's a water filter) used to filter the welding O2.

Hey - when it comes to fighting the beast, absolutely anything and everything is fair game!!!!!

Alan

Title: Re: The things we try
Post by BobG on Mar 11^th, 2004, 2:39pm

Quote:

Tasted a little weird, but still did the trick.

Glad to hear it worked for you. The taste statement?.....
Is the tank a (fairly) new one? Or old and may have rust? Just wondering.....

Title: Re: The things we try
Post by Mr.Happy on Mar 11^th, 2004, 3:04pm

Pete..........very cool job of Rube Goldberg-ing the O2. Some docs are real skillet heads when it comes to O2 scripts.
Over on the OUCH site is a list of docs folks have recommended: http://www.clusterheadaches.org/doctors.htm
Two listed in the Cleveland area: Dr Salamon, Cleveland Clinic and Robert S. Kunkel, Cleveland. They may be worth a try. Might as well go ahead and find a doc that'll work with you Now. Over the years, you'll be at this again.

And again, and again.......
RJ

Title: Re: The things we try
Post by echo on Mar 11^th, 2004, 3:17pm

Gald to read that the O2 worked for you Pete.

I have forwarded your name to the DEA agents in your area. Anyone who goes around sniffing oxygen is a criminal and must be executed immediately before they cause irreperable harm to the rest of the civilized population.

Welcome to the cluster family.

Title: Re: The things we try
Post by BobG on Mar 11^th, 2004, 3:26pm

[quote author=echo link=board=general;num=1078965885;start=0#6 date=03/11/04 at 15:17:20]
I have forwarded your name to the DEA agents in your area. Anyone who goes around sniffing oxygen is a criminal and must be executed immediately before they cause irreperable harm to the rest of the civilized population.

quote] Hey Pete. Just claim there is no way you were huffin '02.
Tell them you were in the backyard with OJ and Martha- The-Domesic-Diva decorating the picnic table. They'll vouch for ya.

Title: Re: The things we try
Post by Charlie on Mar 11^th, 2004, 3:40pm

Hi Pete:

Your attacks sound like mine were. I’m pretty sure you can buy welding 02 without breaking any laws. Jonny will read this and this is his thing. Here is a circulatory technique that worked for me

What follows is a technique learned from a neurologist:

I am not sure what mechanism is triggered by this method but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes real concentration. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully the same day. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as an expanding of the artery into your arm while at the same time literally trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood down my neck while looking at my shoulder and trying to feel my circulation. Use your own imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try.This can take a lot out of you but as long as you keep at it, this has a chance of working. Do your best. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea.
This can take a lot out of you and I would have to regroup a bit. So long as you do not entirely slack off, this has a chance of working. Do your best. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie Strand

Title: Re: The things we try
Post by echo on Mar 11^th, 2004, 4:35pm

on 03/10/04 at 23:56:45, CPM wrote:

The things we try
Pete

Just to build on "The things we try".

As I've said before, if running naked down the street with a traffic cone stuffed up my ass yelling "Look at me, I'm the Space Shuttle", would eliminate CH -- I'd do it!

Title: Re: The things we try
Post by Melissa on Mar 11^th, 2004, 4:42pm

oh echo... [smiley=crackup.gif]

Title: Re: The things we try
Post by BobG on Mar 11^th, 2004, 6:12pm

Hey echo......
That won't work. Cosmic energy enters through your noggin.

Put on your tin foil hat, then stuff the traffic cone. If that doesn't work I'll call ya. [smiley=laugh.gif]

Title: Re: The things we try
Post by 9erfan on Mar 11^th, 2004, 7:12pm

on 03/11/04 at 16:35:47, echo wrote:

Something makes me think you'd try it even if it didn't eliminate clusters!

Title: Re: The things we try
Post by bobkip on Mar 12^th, 2004, 2:06am

Pete,
One way or another, get some O2. It's worked for you and screw the idiot doc that won't script it. Either find a new one or go the welding route (jonny will be glad to help there).
Kip

Title: Re: The things we try
Post by echo on Mar 12^th, 2004, 9:29am

on 03/11/04 at 19:12:29, 9erfan wrote:

Something makes me think you'd try it even if it didn't eliminate clusters!

LMAO Nice one. I'll send you the bill for cleaning coffee off my keyboard.

Title: Re: The things we try
Post by ljd1963 on Mar 12^th, 2004, 2:25pm

Hands and Arms up for you Pete...whatever works!!! Jim

And ECHO..uU are a TRIP!!!

Title: Re: The things we try
Post by tnpruby on Mar 15^th, 2004, 8:54am

[smiley=laugh.gif] Echo you are a card !! How funny, Hey whatever works, just be careful, seriously talk to your doc about a script..We are here...Toni 8)